Why was this research needed?

The research team know from parents that these first conversations around neonatal palliative care can remain with them for the rest of their lives. Research in this area is often carried out a long time after the conversation and recollection is affected by what happened. This can make it difficult to find out how best to improve support for parents when doctors first approach them to discuss moving towards palliative care for their baby. The team also know from their research that these first conversations may often go very wrong and become what they call ‘misaligned’, with the parent and the doctor taking very different views of what is the best thing to do. Sometimes this leads to outright disagreement, which adds unnecessary distress to parents already going through an extremely traumatic time.

Professor Marlow and his team have also found that how doctors handle these situations is usually based on their own experience or on training that involves sitting in on conversations with more experienced doctors and families. In a survey of doctors in 2014, most wanted further training in these conversations and breaking bad news, and one in six had not received any proper communication training.

The medical governing bodies tell doctors to explain to parents that they are making a recommendation based on the medical team’s agreed opinion and to focus the discussion on what course of action is in the baby’s best interests. The team have used recordings of real conversations between doctors and parents to identify different ways in which doctors introduce the possibility of changing to palliative care. They found that using recommendations and a ‘best interest’ approach early in conversations often led to a breakdown in the conversation.

What the researchers did

This research aimed to improve the way doctors talk with parents about the decision whether or not to start palliative care for babies who have life-limiting conditions or a poor outlook. Firstly, the researchers recorded more conversations between parents and doctors and used these new conversations to ensure that the classification scheme for assessing the conversations between doctors and parents was valid.

During the remainder of the study, they used these conversations as part of a training package designed to improve the confidence and understanding of doctors in approaching the subject with parents. The package consists of two workshops and an on-line programme (called an e-portfolio) designed to help individual doctors reflect on conversations. The research team measured the effect of the training programme by asking the participants to record conversations before they start and then some time after the training has happened. The classification scheme was then used to show whether or not the training has led to better and more parent-focused conversations. The team ran a pilot workshop to test this approach which was very well received by the doctors who attended and showed an improvement in their confidence at approaching these conversations.

The team was supported by an active Parent Advisory Group, including parents who themselves have had such conversations and have had to make challenging decisions for their own children. Having such insight ensured the project maintained its focus on the long-term wellbeing and outcomes for families. The parent advisory group was supported by Bliss, Sands, Child Bereavement UK and Together for Short Lives, all of which have experience in understanding the communication challenges of a neonatal service. It is also relevant to the content of the professional training programmes that they run. Better communication when first discussing palliative care will benefit families, improving their feeling of support in the very difficult decisions they have to make, and reducing conflict with the medical team looking after them and their baby.

What the study found

The research study resulted in the development of a high-quality training programme, supported by Sands, that helps doctors have better conversations with parents about changing from treatment in order to try to prolong life to palliative care to make their baby as comfortable as possible at the end of their life. A leaflet was also produced to provide doctors with key points and advice around such difficult conversations (see below). 

Lead researcher: Professor Neil Marlow, UCL Elizabeth Garret Anderson Institute for Women’s Health, London

Sum awarded: £93,712.71

Other funding: Pilot work was initially supported by a National Institutes for Health Research grant

Duration of study: January 2018 to December 2019